Expert treatment and rehabilitation services for children with spina bifida
At the Johns Hopkins All Children's Spina Bifida Clinic, we understand a diagnosis of spina bifida requires lifelong treatment with multiple specialists. Our team of experts based in St. Petersburg, Florida, ensure that your child has the opportunity for their highest level of function.
Spina Bifida Clinic
Our Spina Bifida Clinic offers a comprehensive approach to caring for your child. Our team helps you make decisions through family-centered care that promote independence as much as possible into adulthood. This begins with a well-coordinated plan involving evaluations and the latest therapies at every stage of their life.
Comprehensive care for spina bifida
We develop a personalized and coordinated care plan for your child. This involves our team and a range of experts conveniently located within the hospital to be involved with the care of your child.
We meet with each patient to set goals for age-appropriate care at each developmental stage.
Patients at the Spina Bifida Clinic can also be referred to the following specialties:
We serve families throughout the greater Tampa Bay area, across the state of Florida and beyond. For more information about how our program can help your child or to make an appointment, please contact the program’s nurse coordinator.
What is spina bifida?
Spina bifida is a type of neural tube defect that occurs within the first trimester of pregnancy. The spine and spinal cord don’t form properly due to a combination of genetic or nutritional risk factors, such as a family history of neural tube defects and folate (vitamin B-9) deficiency. Spina bifida may affect the baby’s brain, spinal cord and surrounding tissues that enclose or protect them.
Spina bifida aperta — Aperta means open in Latin. This includes several types of spina bifida ranging in appearance and complexity.
- Myelomeningocele (my-uh-lo-muh-NING-go-seel): The most severe form of spina bifida, occurring when a protrusion outside the body contains nerves or part of the spinal cord.
- Lipomeningocele: Often indicated by a fatty mass or abnormal appearance (discoloration, birthmark, indentation) over the low back in the lumbosacral region. This is generally a closed rather than open lesion.
- Dermal sinus tract: When the spinal cord is connected to the skin, usually the lower portion of the spine.
- Split cord malformation (Diastematomyelia): This occurs when the spinal cord is split into two separate cords and can be seen in conjunction with myelomeningocele.
- Meningocele (muh-NING-go-seel): The membrane covering the spinal cord protrudes outside the body but does not contain any nerves or other portion of the spinal cord. This may not be accompanied by any neurological damage.
How is spina bifida diagnosed?
Spina bifida is often diagnosed through prenatal testing. One test is a simple blood test that measures how much alpha-fetoprotein has entered the mother’s bloodstream. A high amount could indicate that the baby has spina bifida. Most often, spina bifida is detected through prenatal ultrasound. Amniocentesis and other tests can also be performed to detect or confirm the presence of spina bifida.
At times, if relatively small, spina bifida is not diagnosed during pregnancy and discovered at or after birth.
What are the treatment options for spina bifida?
Treatment options for spina bifida depend upon the type and severity. A neural tube defect can involve different areas of the body beyond the nervous and skeletal systems. Your child may require the expertise of a team of medical professionals.
Families that face spina bifida have a good reason for hope because most children with this defect go on to live active and productive lives. Some go on to college, hold jobs in a range of professions and have families. This is especially true with encouragement and support from loved ones and the best resources available.
Spina Bifida Association — The mission of the Spina Bifida Association is to build a better and brighter future for all those impacted by spina bifida.
Hillsborough County Adaptive Sports Program — HC Adaptive Sports provides year-round sports and recreation programs that promote physical activity, healthy lifestyles, and recreational and competitive sports opportunities for children and adults with physical disabilities.
Read more about spina bifida causes and types.
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